My husband Dave was diagnosed with Guillian-Barre Syndrome on June 3rd. He spent about a month in the hospital and a month in a rehab hospital. He was on a ventilator too. He came home August 1st. He is doing great and has progressed really well. He walks very slow and doesn't have the strength that he used too. He is also battling nerve pain. He is already on a strong pain med from a back surgery he had 3 years ago, but it doesn't seem to help with the nerve pain. This pain usually hits him at night in his hands and feet. We are going to talk to the doctor about getting on Gabbapentin. He was on it years ago for his back but didn't think it helped much. What concerns me the most is the first time he got out of ICU in June and went to a rehab hospitl they put him on the Gabba. Three days later the GBS symptoms were back and he had to go back to ICU for another round of the IVIG treatment. Probably just a coincidence, but does anybody know if the Gabbapentin is really helpful for nerve pain? And can it cause the GBS to return? Does anyone know how to prevent the GBS from coming back? I have heard some where it returned years later.
Hi as in all cases everyone is different I have a lot of nerve damage left partial paralysis CIPD arthritis and back issues to many to list I am 7 years out I take strong pain medicine but in addition gabepatin it does help some but it makes me very tired more so than usual also take flexeril for muscle issues I wanted to try lyrica but when I had insurance the company would not pay. They also tried me on cymbalta for nerve pain it is a antidepressant it did not help my nerve pain and it had some very bad side effects with depression
If I can share any of my experience please let me know
Try using a heat pack. It works best for my daughter. If you can't buy one, you can just make one using fabric & put wheat in it. Haven't heard about Gabbapentin causing GBS to return. Not all pain killer helps GBS pain. Gabbapentin works for GBS because it treats nerve pain.
I had been first diagnosed with GBS 8 years ago. I still deal with chronic nerve pain, muscle weakness, fatigue, etc...
I was taking Gabapentin for approx 6 yrs. It dulled the pain but did not take It away. But unfortunately it also made me feel as my brain was also "dulled". I had to go through 3 different neurologist to find one to be proactive. And series of other options trying to treat the symptoms (side effects) before my insurance finally accepted accepted Lyrica. This also just tempers the pain, does not take it away. But I like it better than the gabapentin.
The illness, and meds are different for everyone. I find even the docs say the same.
Good luck.
Talk to the docs about everything. My mistake is I accepted the new norm for too long rather than advocating for myself.
It helps my husband more than anything else. He has had GBS since April 2103. He takes gabapentin and no narcs. He takes 1200mg at 6:00 in the evening, he says it helps him sleep as well because it takes away the pain. He tried Lyrica and had a very bad side effect, a mental breakdown, just out of no where he got extremely emotional.
I have been on Gabapentin for two years. I take 600 mg three times a day. Like diz said, it doesn’t take the pain but does make it bearable. I’ve tried a number of times to wean off it, but haven’t been able to go lower than what I’m at now. I was on 1200 mg three tunes a day for about a year. I also take 800 mg of ibuprofen with the Gabapentin and a couple of Tylenol. It gets me through the days able to function well enough that most people think I’m all better. Good luck!
Been 18 mos, demylation traveled from feet to hips before diagnosis and IVIG stopped progression. Nerve damage causing severe muscle and cramping muscles and, toes and feet sensation. PT and exercise got me back to walking and functioning but damage taking a very long slow time to heal, if ever. Taking 600 mg 4 times per day, takes the edge off but still very uncomfortable sensations. It helps, and My body tells me when the 6 hrs are up. Slightly dulls reaction time and mental acuity, but being non narcotic, works for me. Golfing again, handicap went from 12 to 20, but back down to 17.
i had gbs a few years ago. doctors told me i had a mild case of it. i was in the hospital for a week and off of work for a month. when i first got home i would get nerve pain from my butt to my foot on my left side. like someone just stabbed me with a knife and ripped it all the way down. it was really bad at first but over several months it went away. i still have numbness in my hands and feet on a daily basis but that i can deal with. the heat and humidity are my enemies though. they wear me out like i ran a marathon or something. i cant remember the pain meds i took at first but they never really helped me much as i remember it and finally the severe pain went away. i've been trying to stay consistant with my workout routine but sometimes find it difficult because of how tired i am. it seems to be easier in the fall and winter for me to stay working out because it is cooler. i am trying to eat healthier and stay working out but even still i am not what i was, but a lot better than when i had it. i have heard that it can come back. i will never have a flu shot again and i stay away from people who do have it. i hope that helps.
I have also been told magnesium works very well for muscle and nerve pain
Jimmyjomo said:
Hi as in all cases everyone is different I have a lot of nerve damage left partial paralysis CIPD arthritis and back issues to many to list I am 7 years out I take strong pain medicine but in addition gabepatin it does help some but it makes me very tired more so than usual also take flexeril for muscle issues I wanted to try lyrica but when I had insurance the company would not pay. They also tried me on cymbalta for nerve pain it is a antidepressant it did not help my nerve pain and it had some very bad side effects with depression If I can share any of my experience please let me know
I haven't heard anything about it making the GBS relapse. I was released from the hospital in Dec 2013, and in Jan 2014 I was off the Gaba for a few days and it sent my pain into an ungodly downward spiral of pain. I was hallucinating it was so bad and had to go to the ER. Once I finally got back on the Gaba and got my pain meds straightened out, it got better. Not gone, but better. It took a couple of weeks to get it under control. Now, I NEVER miss my Gaba meds. I'm on the max dose. 1200mg 4X a day. Hope this helps. I do believe the Gaba helps along with other pain meds.
I’m 3yrs out and still have a lot of pain in my legs and feet. I was in the hospital for a month and half and rehab for 3 weeks. I had a severe case as I was on vent for a week. The gabupetin has helped it to be manageable . Best wishes